I saw the neurologist again yesterday and I've been told (again) that I'm "atypical" and that my symptoms might be caused by one of the Parkinson's Plus conditions, rather than Idiopathic Parkinson's. I've Googled this and it's not good.
Has this happened to anyone here?
Well, that was three months ago!
Got an official (or as official as anyone will give me) diagnosis of PD in January.
Tabbycat,
I would like to know more about the symptoms which occasioned your neuro to suggest that it may be Parkinson's plus.
Also what your current meds regime is and do the meds improve your symptoms or make things worse.
I was told much the same by a neuro, a year after my diagnosis, as I have poor response to both Sinemet and dopamine agonists. I am five years into this PD, aged 65 and my neuro now says my PD is mild!
As they say in Dad's army, "Don't panic".
Best Wishes,
Arsene
Hello Arsene
Apparently I didn't have the right sort of tremor. 
In fact, two of the four neurologists I saw wrote in their letters to my GP that I didn't appear to have a tremor at all - which was rubbish! It does tend to come and go, which isn't typical of PD, but mostly it's there.
I eventually saw a movement specialist who said he was pretty certain it was PD - there's no way of being 100% certain until they do an autopsy.
The DA I'm on (8mg Ropinerole a day) is helping a bit, especially with the fine motor skills (I can write and sign my name again!), less so with walking, stiffness and muscle aches. I can increase the dose but I'm reluctant to at the moment as I'm pretty certain it's giving me a tight, wheezy chest so I want to talk to the neurologist about it first.
Tabbycat,
Thanks for your reply.
In order to understand PD and what it entails, I joined my local PD group.
I am not normally a group person, but the members at the local monthly meeting have been marvellous. In talking through the subject with individuals there, I have learned much more than one can gain from a half hour consultation with a neurologist. We discuss symptoms, treatments and the details of coping with PD both in the short and long term. No doubt you have many questions and a group will be an ideal way of gaining some knowledge and support.
Five years ago my first medication was Mirapexin, a dopamine agonist. I did not then know how disturbing the PD meds can be. I followed my neuro's instructions, unaware that as the dose was increased over time, that the side effects would hit me hard. The doctor said to be aware that Mirapexin may cause compulsive behaviour but I thought that would be mild. By the time I reached the recommended dosage of 0.35mg three times a day, I was irrational and hallucinating.
I titrated the dose down over a week and the problems went away. That was a hard lesson that taught me to research online any drug that I planned to take. Again these pitfalls can be discussed in detail with your local group members. I still take Mirapexin, though at 0.088mg only, three times per day and find them effective at that low dose.
Parkinson's UK will put you in touch with your local group if you call or email them. I hope this missive will be of help to you. Best Wishes, Arsene
Thank you Arsene. I do have a local group but haven't felt the need to join yet. Possibly this says something about how I haven't yet come to terms with my diagnosis!
I'm lucky in that - so far - I've had few side effects from the DA (apart from the chest problem) which is why I want to stop at 10mg (I said 8mg in my earlier post, it's actually 10). I certainly don't want to be irrational and hallucinating - that must have been awful.
I research everything, even supplements, now as I don't feel I can totally trust the professionals to be honest (or even knowledgeable in some cases). PD is an odd disease, and it's obviously not high on the list of priorities when it comes to finding a cure or even something to slow the progression down. I do feel sometimes that we're just given what there is, regardless of side effects and long term damage.
Agree with your last paragraph, Tabbycat. We are given whatever seems to be the recommendation of a particular neurologist in any particular hospital. Reading through the posts of people on this forum, it's obviously trial and error with different meds. to a certain extent. Until they come up with a cure I think you're right to do your own research.
My latest addition to the Mucuna is Lithium Orotate........better than anti-depressants and keeps you calm. You may like to research it.
Happy Easter.
Twinks.
I live in a city that has at least 6 major hospitals that treat Movement Disorders as a speciality.I do attend several support groups with my wife for 15 or more years and the big changes over the years, is an increase in the need for exercises & proper diet with supplementation of certain vitamins ,other then that, I always say "its the same ol Sinemet" (Madopar in UK) ,truly nothing new in the drugs arena to help us yet .
What is great about support groups is to meet people that offer advice ,practical advice or shortcuts as they arise and to establish a buddy system if needed to shop or sit with a patient who may be alone.
My wife takes her DA Ropinorole only towards the end of the day so as not to nod out and I also wish to add that she has never been irrational on her DA these last 15 years,
Her hallucinations are many ,each and every night plus, she talks vividly while asleep oddly perhaps in the morning, I am the only one who remembers those episodes ,she does not and for her it is not scary at all.
PD is such a unique disease ,I have even heard younger Neurologists mention that it may not be a clear cut disease but a syndrome of several disorders ,low blood pressure, defects in the blood brain barrier mechanisms that may allow metals that non PD folks can filter ,into the brain causing cell damage.
I could go on and on about different therapies and theories ,we have tried acupuncture ,Qi Gong exercises TaiChi (Chinese exercises are big in NY for PD) & even PD "boxing" developed at a hospital here to improve eye ,hand muscle coordination, all have some degree of help for some folks.
One thing my wife has been faithfull to do from day 1 as suggested by her PD Doctor is stay on an enysyme called CQ-10, there is literature on the web about this supplement on the web, Our Dr. thinks it may help PD symptoms and I must say my wife is never tired ,the nodding she did have was taking her DA during the day but not from fatigue.
Just a few thoughts,
Mike
P.S.
Sorry for the typo's here my edits are not working well in preview .
Hi Tabbycat - just read your post, I have idiopathic parkinsons but don't know the difference between the parkinsons plus and mine. I know with the first year of DX it is all trial and error in finding what meds suit your body because everyone is so differernt. I feel that only you knows your own body so speak up if the meds are'nt suitable, perhaps have a word with your parkinsons nurse prior to your app with the neuro. I am like you reluctant to go on any other meds because of hallucinations and other side effects the meds cause, that is why I still only take 16mg of ropinirole per day after six years!
Take care - Sheila x
Hi Sheila
As I understand it, there's Parkinsonism, which is a blanket term for anything that has the typical parkinson's symptoms. Within that is idiopathic PD (PD without a known cause) and Parkinson's Plus (a group of neurodegenerative disorders which have the same symptoms as PD plus a few extra). Hope that helps!
